Scientists, health-care innovators, patients and policymakers discussed advances in cancer detection and treatment. They examined how the U.S. health-care system is being shaped by a disease that touches the lives of millions, and provided new insights on the host of challenges cancer presents.

Speaking to The Washington Post Tuesday, a group of policymakers agreed that the funding efforts for the 21st Century Cures Act bill to defeat cancer will be complicated. “All of the money has to come back through the authorization process when we do appropriations,” Rep. Marsha Blackburn, (R-Tenn.), said. “That is a way for us in Congress to have the ability to do that double check and do the necessary oversight.” Her democratic colleague Rep. Debbie Wasserman Schultz, (D-Fla.), called the yearly appropriation process for infinite regulatory rollback “a real concern,” noting that the pay structure for the bill includes a “lock box” of dollars that can exclusively be allocated on cancer funding, but that would disappear if not fully used. Greg Simon, Executive Director of the White House Cancer Task Force, said that while this could be concerning, it is unlikely that all of the money wouldn’t be spent. “Unless you really don’t like Cancer spending, that money can only be used cancer,” he said.

Speaking to The Washington Post Tuesday, Dr. Robert Nussbaum, Chief Medical Officer of Invitae, said the involvement of people who are not of European background in genetics research has been much more limited. “The result is that we don’t have as good a picture of the encyclopedia of what’s a damaging and not a damaging change in the genome of people who are not of European background,” Nussbuam said. “That’s a deficiency," Nussbaum noted that the NIH is very aware of this and is working to address that research gap.

Speaking to The Washington Post Tuesday, Drew Pardoll, Director of the Bloomberg-Kimmel Institute for Cancer Immunotherapy at Johns Hopkins, said understanding immunology isn’t that hard if you think of it like a car. “You need the gas pedal to go, but you also need the brakes,” Pardoll said, likening the brakes to FDA approvals. “The immune system can steer itself very carefully in a very focused way.”

Speaking to The Washington Post Tuesday, Sarah Donovan of Avalere Health, said it’s important for health-care professionals to understand individual cancer needs and circumstances alongside larger population trends. “I think really understanding patients’ perspective as they are going through their cancer journey is so important in all of this,” Donovan said. “A patient that has a terminal diagnosis or has a set period of time that they are going to live, may be willing to endure really difficult side effects if it gives them more them with their family. These are the difficult things that you have to consider as a patient that you may not be considering If you are making decisions on a population basis.”

Speaking to The Washington Post Tuesday, Gregory Aune, Assistant Professor of Pediatric Cancer Research at The University of Texas Health Science Center at San Antonio and young cancer survivor explained how the side effects of early cancer treatments can live with a person for the rest of their life. “I had hyperthyroidism from the radiation I received,” Aune said. “I found out I had diabetes which was a consequence from the radiation to my abdomen.” Aune concluded “What we have to teach our patients is that a new part of their life comes next. What I’ve learned over the last 27 years as a survivor is that it’s really never over. There’s consequences of the treatments that we take.”

Speaking to The Washington Post Tuesday, Fran Drescher, actress and founder of the Cancer Schmancer Foundation, revealed the difficulties of assessing and diagnosing cancer. “It took me two years and eight doctors to get a proper diagnosis for uterine cancer,” Drescher said. “We have a medical philosophy that if you hear hooves galloping, don’t look for a zebra, it’s probably a horse, but if you happen to be a zebra you are slip through the cracks.”

Kris Coratti is the Vice President of Communications and Events for The Washington Post. She is responsible for developing and managing The Post’s communications strategy in addition to overseeing conferences and events.

SPONSOR: Daniel P. Amos

Chairman and Chief Executive Officer, Aflac and Aflac Incorporated

Dan Amos is chairman and chief executive officer of Aflac Incorporated. He joined Aflac in 1973 and worked in the sales area for 10 years. In 1983, he was named president of Aflac, chief operating officer in 1987, chief executive officer of Aflac Incorporated in 1990 and chairman in 2001. Aflac is a Fortune 500 company that insures more than 50 million people worldwide. It is the leading provider of individual insurance policies offered at the worksite in the United States and is the largest life insurer in Japan in terms of individual policies in force. In Japan, the company insures 1 out of 4 Japanese households.

SPONSOR: Kathelen Amos

President, Aflac Foundation

Kathelen Amos is the President of the Aflac Foundation.

View from Washington

Rep. Debbie Wasserman Schultz

(D-Fla.)

Rep. Wasserman Schultz represents Florida's 23rd Congressional district, which encompasses parts of Broward and Miami-Dade counties. Before joining the U.S. Congress, she was first a Representative and later a Senator in the Florida State Legislature. Rep. Wasserman Schultz is a person respected by her colleagues for her tenacity and her hard work on many important issues. In March 2009, after announcing her own battle with breast cancer, she introduced the Education and Awareness Requires Learning Young Act, or EARLY Act (H.R. 1740), a piece of legislation that directs the Centers for Disease Control and Prevention to develop and implement a national education campaign about the threat breast cancer poses to all young women, and the particular heightened risks of certain ethnic, cultural and racial groups.

Rep. Marsha Blackburn

(R-Tenn.)

As a small business woman, author, mother, grandmother, and Member of Congress, Marsha Blackburn has dedicated her service to making America a more prosperous place to live. Whether it is was leading the fight to defeat the proposed state income tax during her time in the Tennessee State Senate or her efforts in Congress to restore fiscal responsibility, Marsha has fought tirelessly for the principles and values that unite conservatives. Representing Tennessee’s 7th District, Marsha continues to advocate for a small, efficient federal government that is accountable to its citizens.

Greg Simon

Executive Director White House Cancer Task Force

Greg Simon has held senior positions in both chambers of Congress and the White House, been a senior strategy consultant to a variety of international technology CEO’s, led a national patient advocacy nonprofit he co-founded with Mike Milken and served as a senior executive at a large pharmaceutical corporation. He has developed a reputation as a visionary strategist, a dynamic public speaker and writer, and as a knowledgeable analyst of emerging trends in healthcare, information technology, innovative drug research and development and patient advocacy.

Interviewed by Karen Tumulty

National Political Correspondent, The Washington Post

Karen Tumulty is a national political correspondent for The Washington Post, where she received the 2013 Toner Prize for Excellence in Political Reporting. She joined the Post in 2010 from TIME Magazine, where she had held the same title. During her more than 15 years at TIME, Tumulty wrote or co-wrote more than three dozen cover stories. She also held positions with TIME as congressional correspondent and White House correspondent. Before joining TIME in 1994, Tumulty spent 14 years at the Los Angeles Times, where she covered a wide variety of beats. During her time there, she reported on Congress, business, energy and economics out of Los Angeles, New York and Washington.

What your genes (don't) tell you

Robert Nussbaum

Chief Medical Officer, Invitae

Dr. Robert L. Nussbaum, a board certified internist and medical geneticist, specializes in the care of adults with hereditary disorders. Dr. Nussbaum has served as Invitae’s Chief Medical Officer since August 2015. Prior to joining Invitae, he was chief of the Division of Genomic Medicine at UCSF Health where he also held leadership roles in the Cancer Genetics and Prevention Program beginning in January 2009 and the Program in Cardiovascular Genetics beginning in July 2007. From April 2006 to August 2015, he served as a member of the UCSF Institute for Human Genetics. Prior to joining UCSF Health, Dr. Nussbaum was chief of the Genetic Disease Research Branch of the National Human Genome Research Institute, one of the National Institutes of Health, from 1994 to 2006. He is a member of the Institute of Medicine and a fellow at the American Academy of Arts and Sciences.

Theo Ross serves as the director of the UT Southwestern Cancer Genetics Program in Dallas, Texas. She received her M.D. and Ph.D. from Washington University Medical School in St. Louis and completed her medical residency at Harvard’s the Brigham and Women’s Hospital, followed by a fellowship in oncology at the Dana-Farber Cancer Institute. Her laboratory investigates the normal function of BRCA1 as well as the basic biology of cancer cells and how those cells resist cancer drugs. Her first book A CANCER IN THE FAMILY: Take Control of Your Genetic Inheritance was published by Avery (Penguin/Random House) Books this year.

Moderated by Alison Snyder

Executive Editorial Producer, The Washington Post

Alison Snyder is the Executive Editorial Producer for the Washington Post.

The hope versus the hype

Drew Pardoll

Professor of Oncology, Medicine, Pathology and Molecular Biology and Genetics, Johns Hopkins University

Dr. Pardoll is the Abeloff Professor of Oncology, Medicine, Pathology and Molecular Biology and Genetics at the Johns Hopkins University, School of Medicine. He is the Director of the Bloomberg~Kimmel Institute for Cancer Immunotherapy and Co-Director of the Cancer Immunology Program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

Elaine Mardis graduated with a B.S. in zoology and completed her Ph.D. in Chemistry and Biochemistry in 1989, at Oklahoma University. Dr. Mardis then was a senior research scientist at BioRad Laboratories. She joined the faculty at Washington University School of Medicine in 1993, and served as Co-director of the McDonnell Genome Institute from 2002-2016. In September 2016, she became the co-Executive Director of the Institute for Genomic Medicine at Nationwide Children’s Hospital and Professor of Pediatrics at the Ohio State University College of Medicine. Her research interests focus on the application of next-generation sequencing to characterize cancer genomes, to design personalized cancer vaccines, and to support therapeutic decision-making.

Vinay Prasad

Assistant Professor of Medicine, Oregon Health and Science University

Dr. Prasad is an Assistant Professor of Medicine at Oregon health and science university. His research is on health policy, cost of drugs, evidence based medicine. In his practice, he takes care of patients with cancer.

Dr. William Hearl is the founder of Immunomic Therapeutics, Inc. and is an experienced and successful life science businessman and entrepreneur. Dr. Hearl is adept at brokering mutually beneficial partnerships and identifying non-traditional collaborations and investment opportunities.

Rep. Leonard Lance

(R-N.J.)

Congressman Leonard Lance was elected to the United States House of Representatives in November 2008 and reelected to a fourth term on November 4, 2014 to represent New Jersey's 7th Congressional District. Prior to coming to Congress, Lance served as a member of the New Jersey State Senate beginning in 2002, where he represented the 23rd Legislative District. He held the position of Minority Leader of the Senate from 2004 to 2008.

Moderated by Carolyn Johnson

Reporter, The Washington Post

Carolyn Johnson is a reporter covering the business of health. She previously wrote about science at The Boston Globe.

Growing up with cancer

Gregory Aune

Assistant Professor of Pediatric Cancer Research, The University of Texas Health Science Center at San Antonio

Dr. Gregory J. Aune is the Stephanie Edlund Distinguished Professor of Pediatric Cancer Research and a St. Baldrick’s Foundation Scholar at the Greehey Children’s Cancer Research Institute in San Antonio, TX. His experience in pediatric cancer spans over 27 years and encompasses his own patient experiences, research in experimental therapeutics, clinical care of pediatric oncology patients, and childhood cancer advocacy. Dr. Aune is a national leader in childhood cancer advocacy. He serves on the National Cancer Institute Council of Research Advocates and is an active participant in numerous organizations focused on improving outcomes and quality of life for childhood cancer patients. In May 2015, Dr. Aune addressed the 68th World Health Assembly in Geneva, Switzerland and called on the World Health Organization to make childhood cancer a top global health priority.

Ariella Chivil

Patient Advocate

Ariella Chivil is a self-described “patient turned oncology geek.” Diagnosed with Hodgkin lymphoma prior to her junior year at UPenn, she managed coursework, on-campus commitments, and a summer internship while undergoing active treatment. Confronted with a refractory, metastatic disease, she received over a dozen different treatments before enrolling in an immunotherapy clinical trial. Ariella managed to balance a full-time job alongside infusions and ER visits, and ultimately “graduated” from the trial and transitioned into a career in healthcare IT. Today, Ariella champions patient advocacy and works with leading organizations such as the Cancer Research Institute to share her immunotherapy success story.

Matthew Zachary

Founder, Stupid Cancer

Diagnosed with life-threatening brain cancer at 21, concert pianist and agency veteran Matthew Zachary is the Founder/CEO at Stupid Cancer, the largest charity comprehensively addressing young adult cancer. As Chief Angry Officer of the young adult cancer movement, his acclaimed tirades can be enjoyed with wine on LinkedIn, US News, Huffington Post and PM360 Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and lives in Brooklyn with his family.

Moderated by Terri Rupar

National Digital Editor, The Washington Post

Terri Rupar is the national digital editor for The Washington Post, where she’s worked since 2003. She has written about parenting with cancer.

Fran Drescher is also an accomplished actor and author of two New York Times best sellers. A 10 year uterine cancer survivor, she is the Founder, President & Visionary of the Cancer Schmancer Movement, a non-profit organization that is focused on prevention & early detection of cancer.

Taboo is a multi-platinum American hip hop artist and a founding member of the Black Eyed Peas. He is a singer, rapper, dancer, actor, DJ, author, designer, as well as a husband & father to three sons and a 9-month-old daughter.

Moderated by Michelle Singletary

Columnist, The Washington Post

Michelle Singletary writes the nationally syndicated personal finance column, “The Color of Money,” which appears in The Post on Wednesday and Sunday. Her award-winning column is syndicated by The Washington Post Writer’s Group and is carried in more than 100 newspapers. In 2010, she released her third personal finance book, “The Power To Prosper: 21 Days to Financial Freedom.”

National Institutes of Health Director Dr. Francis Collins told The Post’s Lenny Bernstein the Administration “ran out of money” to fund Zika vaccine trials and that funding Zika research has impacted other disease funding, including cancer and Alzheimer’s research. "If we have no money we can't keep running the trial," Collins said.

Former White House Chief Technology Officer Aneesh Chopra said Wednesday that there’s an “mismatch” when it comes to patient data standards among the private sector and that the federal government should play a role in closing those loopholes. “We don’t have common standards to give patients their own data and to share it with whoever they want,” Chopra said. “The U.S. model is that the private sector is supposed to step up and sort through all these thorny, inner operability standards issues. During my tenure for President Obama we clarified that there are often gaps and when there are gaps the federal government can convene and call the industry to action.”

Johns Hopkins University engineer Michael McLoughlin told The Washington Post Wednesday that advancements in technologies should force us to rethink the definition of what is considered a disability in today’s society. “In the prosthetics world, we’ve seen people argue about whether or not somebody with a prosthetic leg has an unfair advantage over somebody that’s able-bodied,” McLoughlin said. “Just imagine when we are able to actually communicate via the brain. Somebody that has a disability may be far more superior than any of us.”

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